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We moved over to the 'B' side of the room that we're in because our roommate left today. About an hour after we completed the move, we got a new roommate. Appears that the kid is also an oncology patient who has some neurological problems - he talks very loudly in his sleep and appears to drift off into dream-land and have discussions with people he's imagining. I overheard his parents telling someone that they feel sorry for 'the little guy in the other bed' because their kid is like this.

Asher's been in a pretty good mood lately and saw Alexa for 5 hours today.

Oh yeah... Asher ATE!

Last night, he ate an entire single-serve-box of Cheerios, and then again this morning he had a bunch of cheerios again. For lunch, Alexa got Asher to eat about 7 bites of cheeseburger too, so let's hope this is the start of a great trend!

I've been sticking with Steph's idea of giving Asher a choice. Either he can eat, or the doctors may put a tube in his nose. He doesn't like that idea. They've also dropped his caleries to 70% of his daily requirements, so he should be getting hungry now.

No sign of any bacteria, either from his catheter lines or his nasal swabs, so we should be in the clear from that now. Otherwise, over the next 4 days, we'll just be getting Neupogen shots in the morning in preparation for a tuesday stem cell collection.

Finished moving the stuff over to the new room on the oncology floor at about 6:30 this morning and we moved Asher over shortly after 7. Unfortunately, we're on the A side, but our roommates seem really nice so far.

One thing I found pretty funny is that they also have a playstation hooked up and the kid has a gameboy just like Asher. At one time this morning, both kids were playing super mario brothers on their Gameboys. LOL

Asher's in a really good mood this morning after having slept well last night. He's showing no ill effects from the bone marrow aspiration test. I think today he'll get a baseline EKG and a chest x-ray just to get ready for the stem cell collection and ultimate use. Otherwise, now that we're back on this floor, Asher can resume playing in the playroom 4 hours per day if he desires.

As Steph said, we ended up in a quite different place than I was expecting today. The fourth floor. Apparently up here on this floor, they have the asthma kids, other breating problems, RSV kids (when the season starts), and oncology patients who develop some sort of infection.

It all started this afternoon when we, as good parents, mentioned to the nurses that Asher's nose was runny when we were out walking in the hallway. Now that we're up on the fourth floor, I honestly feel like I should have kept my trap shut. My nose runs every time I switch temperatures (from hot to cold) between rooms, and that's what it looked ilke happened to Asher. Just mentioning it was the 'right thing' to do so that they could jot it down.

Well, wouldn't you know it, a few minutes after we mention the runny nose and I run out to get McDonalds, Steph and Asher start to get accosted by people in the room asking questions about Asher's history, allergies, counts, etc. All stuff that was in the charts, and nurses and doctors that we had never talked to before. Eventually, the resident Dr. that had never talked to us prior to that moment, came in to tell us that ..... Heck, I don't even remember what she said...... I just remember that I didn't really like her all that much.

The moral of the story is this.... Runny Nose -> Tissues -> two nurses sticking swabs up Asher's nose to get a 'sample' -> Cancel the 2nd floor room reservation -> Make 4th floor room reservation -> get confined to room for 72 hours.

At least we don't have a roommate. From looking around at the rooms on the 4th floor, only one room had two people in it. I hope it stays that way, the last thing we need is a 'sick' kid to get put in the room with us. Even though the hospital has "it's safe if you're not within X feet" limitations on sick kids in these rooms, AND they have curtains to protect us from all of the germs on the other half of the room, I am still worried that Asher could pick something up.

The nurses that we have up here, will be oncology nurses from the 2nd floor and we were specifically put on the half of the floor that caters to oncology patients when they 'catch' something.

So, here we are, in our corner room on the 4th floor. Asher's in a terrible mood after the move because he wants "Yellow Katie" to be his nurse (He's started calling a few nurses Katie - after our Neurosurgeon Nurse Katie who he has seen LOTS - and Chloe who we had 3 of the last 4 days was wearing yellow today) ..... He wants the "other room" back.... He's in the "wrong one".... and he now has a fever of 38.4 at around 12:30am. Not a very happy camper after the move and after he woke up from a little snooze around 7pm.

Hopefully the tylenol that he was able to swallow will cut the fever.

We still have positive bacteria cultures coming back from the Red lumen on the Ash split catheter. They've taken 5 samples now, the most recent tonight because he had two temperatures of 38.1 or higher in a 4 hour period. They're probably all that same staph bacteria. If there's anything new to pray for tonight, pray that the bacteria gets taken care of by the venkomicin so that we don't need to take a chemo break for surgery to replace Asher's Ash Split Catheter.

At least we have a view of the mountains around Phoenix, the helicopter pad, and one of the sky harbor airport runways.... In addition, my Cellular Card gets 3 bars of reception!

Really kinda feel bad for Asher.... Today he showed interest in eating! He said he wanted a cheeseburger from McDonald's. I had a good feeling about this because that's what he first ate at home after his 2nd craniotomy. Scott went out and got one and when he came back Asher had fallen asleep, or he was faking it because so many people started coming in to talk to me and see Asher (resident, infectious doc, social worker, clincal nurse, ...). It got a little overwhelming for both of us and I think he learned if he closed his eyes people would generally leave him alone. Anyway, he did finally open his eyes and I showed him the cheeseburger and he did smile and take a bite, but 2 seconds later said, "Ick...." and spit it out in my hand. When he had a tiny bit left in his mouth he held out his tongue till I got it off his tongue.

Well, after 48 hours, a blood sample that they cultured from Thursday started to grow some bacteria (Gram positive coccus bacteria) so they took another blood sample today and we'll see if that one grows too. Because Asher does not have a fever, they have a very positive attitude about this being handled by the antibiotics. If, in fact, this bacteria doesn't respond to the antibiotics that we are on and a fever develops again, we may need to add another medicine to specifically fight whatever this is identified as.

At this point, we're still on the three antibiotics which all affect gram positive bacteria - the most common forms of which are streptococcus and staphylococcus.

On a more positive note, they have clamped his drain and are now just measuring the ICP (Intercranial pressure) to see if stays within norms of -7 to +17. This is a very good sign and we pray that it stays like this because then we can remove the drain and not put back in the shunt.

In addition, now that his White counts have come back, we've reduced the morphine from .45 back to .30.

The first round of chemo is over and Asher is in the recovery period now. When asked today, "Do you think you're getting better?" Asher responded with a nod yes. That was Annie that came by and asked him that. A clinical nurse (or something, forget the technical term) that works with Dr. Etzl (who is now specializing in the care of the brain tumor patients because there are so many of them). Annie had been ill and was better so she was just getting into the PICU to check on him and go over a chemo schedule/calendar with me. Asher's numbers are looking up....ANC was 297 this morning (WBC .9 (began as 5.3 before chemo to give you an idea and was .5 yesterday)). I got some good news today....that part of the 2nd and 4th rounds of chemo is oral and could be done at home until his counts got low and/or he got a fever. To me this is good news, but of course scarey too. We'll have to see how it ends up going. Oh, but with the good news came some bad news. I didn't realize we actually have six rounds of chemo because there are five rounds and then the sixth lasts 6 days (which is "a year of chemo in 6 days" that kills his bone marrow) with a stem cell replacement after. It looks like this will all definitely continue into January of 2007, Asher's 4th birthday.

Anyway....

I spent 9 hours with Asher today while Scott went into work. It was so good to see a bit of my little boy returning to us today.

He didn't sleep much at all, only 1 hour of that time. I could tell he was tired but he was back in the fighting it off mood that he usually is! The thing about the 1 hour he did sleep was that he kept jerking, shaking, flailing his arms and legs, half opening his eyes, mumbling....I guess he was dreaming A LOT and I felt so bad for him that he couldn't get some rest.

The other 8 hours we colored (well, I did and Asher pointed and told me colors and got crayons out but didn't have the actual strength to color himself), played a mini-fishing game (he loves those games!), did a dinosaur puzzle one time, looked at some cards he got, opened some gifts he got, played Playstation (Ice Age 2 that he got today and PacMan) and watched parts of 3 movies that were on the hospital TV stations (101 Dalmations, Bugs Life and Madagascar....we see these a lot since they are on the TV there all the time).

In all of this Asher actually smiled a few times! The first few times I saw the smiles he didn't really move his lips up like a full smile you'd think of. I could tell his mouth hurt, but I still knew he was smiling! I do have one photo where a person who wasn't playing with him could know it was smile. Oh, and just to mention, he still doesn't drink or eat anything! The bottle of water he is holding in the photo is his comfort thing right now! I do hope his mouth heals fast. It was so inflammed today; his cheeks are puffed way out. Poor guy.

So the smiles were good to see today! He even had some old expressions during his play, words, movements, excitements. In between he was rubbing his incision a lot (where the shunt was removed in the back of his head), spitting cuz he still doesn't want to swallow still, rubbing his eyes and picking at his eyelashes a lot, holding my hand and rubbing his left ear so much it was red (not sure what is wrong with it....a bit afraid knowing some of what we're doing can cause ear damage (hearing loss) and we were told it would be more so on the left side (I think that is what the doc said and I'll ask again this weekend)). So, it is no wonder he was quite irritable today. Who could blame him.

Another cool thing happened today. Asher told me when to change his diaper. Also, when I asked him if I needed to change it towards evening he kept answering, "Not yet" or "I didn't go yet." This was cool because he was not fully potty trained before all his surgeries and hospitalizations and we had never been to the point of him asking us to get him out of a wet diaper (he used to not care). Yeah for Asher!

We have 5 mouth meds now, six if you include Tylenol. Tonight, Asher got a bit tired of rinsing and spitting, or rinsing and holding in your mouth long enough for his mucus membrane to absorb some of the meds.

tonight was the start of a couple of new things the doctors wanted to do.

' pediatric 123 mouthwash' - which I think has maalox and benadryl in it.Bisacodyl - Laxative

We tried the Bisacodyl in pill form today, but Asher would have none of that. he held it in his mouth until it partially disolved and then spit it out. The pill was smaller than a mini-MM but he still didn't do well with it.

He slept just about the entire day except he was awake from about 8:30 to 10:30 when he participated in all of this mouth-care fun, got his Neupogen shot, a dose of Vincristine, and played two playstation games.

The doctors also restarted the Gentamicin again, but they didn't tell me why and since Asher doesn't have any infections anywhere, nor any cultures that are growing anything, it may just be a precaution since his counts are still zero..

Over the next two days, his white counts should come back up and so should his ANC. He's going to be in more pain in his mouth from the healing, so we've increased his morphine PCA to a slightly higher hourly dose so that he's okay. He's doing great so far with his pressure set to 15 on his drain!

Asher has slept 99% of today away so far. His white counts are starting to recover (up from .1 to .5) and so his body is going to start to heal now. That probably means he's going to be even more tired than before.

The doctor said that now that he's getting white cells back, they are going to start attacking the mucositis in his mouth which means it's going to get inflamed and hurt more than it did before. They'll probably up his morphine because of it to make sure that he's not in too much pain.

if all goes good over the next few days, we'll go back up to the oncology ward on Monday. pray for a continued recovery and for us to not need the shunt back.

more later if there's anything to talk about when Asher actually wakes up.

Did you see Big Brother last night? Two people shaved their heads for a veto challenge "Hair today gone tomorrow"....

Got me thinking that instead of letting Asher's "loose" hair fall all over his face, pillow, sheets, toys, etc. I would help him get it out today. He told me to do it and did say it tickled as I "pulled" (not really pulled, just kinda combed and swept with my fingers). There is some left, on the back where the surgery bandage is and then the rest is bald with "fuzziness."

Anyway, when I got there today (with Aubree) Asher didn't smile or really show much emotion at all....although, I caught a glimpse of joy in his eye at one moment as he looked at Aubree. He held her hand too. Otherwise, I held his hand today and he slept.

He took his mouth meds for me quite well, although doesn't swallow as he is supposed to for the 2nd one.

I could see he was in pain so we were going to hit the button on the morphine and when I told him he said, "In my catheter." He doesn't like the shots he is getting at night and hates mouth meds.

Unfortunately, his fever came back while I was there 38.2C (although, that was armpit temp.... his forehead gave three very different results). He spit out all the Tylenol I tried to give him too.

They raised the pressure of the drain by 5 today and will keep raising it by 5 each day and see if headaches/nausea/vomitting come back. We REALLY hope he doesn't need a shunt, but it is common to need one. Another surgery would really set us back.

Asher B has slept a lot over the past 36 hours. I think the Morphine PCA is really helping him to finally relax and let his body heal instead of being all upset about things.

He vomited a single time again yesterday, at 4am, but pretty much slept. We did get platelets again and he didn't get a fever this time, like he did upstairs.

We played a bit from 10-3, he slept from 3pm-3am, played 3am-5am, slept 5am-9am.

Asher B has figured out that he's starting to lose his hair. He spent about 5 minutes pulling it out from the left side of his head yesterday until I convinced him to stop and today, it appears that a bunch of the hair from that side and the back of his head has rubbed off during the night.

Today should be a pretty uneventful day. He still has no fever. Weight 14.9kg. ANC=0.

The Neurosurgeon nurse is stopping by today to change his bandage, so hopefully that goes well. He always screams a little when we remove his bandages.

I don't really know how I'm holding up. I have felt angry a lot. Yesterday I felt angry again and had a lot of tears. What really sucks is it has only been 12 days, not that I'm trying to count, but oh my God, we have a long way to go yet. I feel like I can't do it....does this get any easier? Is it just this hard because it is the first round of chemo and we didn't really know what to expect? Will the tears that run down my little boy's cheeks ever go away? Will this really cure him? I know....day by day....one day at a time. I'm trying. Yesterday Asher's hair was coming out on his pillow and today he realized he could pull it out himself. Oh my God, this is the hardest thing in my entire life!!!!!!!!!!

For the last 24 hours, Asher's temperature has been normal. That's a wonderful thing!

Today brought out a few different moods. When Asher woke up this morning, he wanted to play his Gameboy and started to talk a lot. Steph had prepared him SOOOO good over the last two days and he took his oral medication (swish and spit / swish and swallow) without argument. All he needed to hear was "Daddy do it, or the nurse do it" and he quickly picked Daddy. He doesn't swallow much of the last one, but at least he swishes really well!

It was good to see that he was feeling so good for a while today! That mood lasted until about 10:30 when he started to look really really tired and started to act more agitated. I tried everything I could think of - we played gameboy, playstation, and all of the other games we had, but nothing would chear him up. Pretty soon we just started watching movies, hoping that he would fall asleep. finally, at 1, he fell asleep. When he woke up, he vomited (only time today), and it was weird during his sleep time, he would randomly shake and wake up and verbally say something we think from his dream. It was very weird to see him sit up and just say something like "don't open the water" and then sit back down and go back to sleep.

Asher's bandage on his head is showing a little more blood in it from the surgery, but nothing to be worried about. We're due for a dressing change on Wednesday and they'll raise the drain pressure too. The neuro team thinks that it will take 14-21 days for his incision to heal due to the size/shape of the incision they had to make due to the area that the shunt poked through.

The "Pain Doctor" Charlene started Asher on a Patient Controlled Analgesia (PCA) to help with his pain. We had upped his morphine to 1.5mg every 2 hours, but for about the last 30 minutes of that period, Asher would get extremely aggitated and appeared to be miserable. What the PCA does is give a constant .3mg dose every hour and it has a button that we can press (or he can press) that will give him a .4mg dose to make the pain go away. That way, he can just be in constant "less pain" and when more focused/extreme pain hits him, we can push the button and get .4mg extra ever 15 minutes.

Asher has full blown mucositis now and if what he told us this evening is true, he probably has sores in his mouth and at both ends of his Gastrointestinal (GI) tract now. OUCH!!!!!!!!!!!!! (A couple of people asked why we couldn't give Asher a Tylenol suppository, and the sores are why we can't)

It also appears that Asher's hair has started to come out. His pillow has a few "tens" of hairs on it tonight and his eyelashes actually have started to come out too. I suspect that over the next couple of days, the back of his head will start to lose more hair where he is on the pillow. Most of the back of his head is shaved due to the shunt surgery, but there's still some areas of hair back there.

Asher's ANC is officially Zero now and we're counting on the Neupogen (Filgrastim) to aid in the recovery of his defenses. Asher has been getting a subcutaneous shot each day now for 3 days. We've been giving them to him in the leg and he doesn't seem to mind _that much yet.

The Nurse assigned to us from today and tonight seem really attentive and good and they are taking the time to talk and care for Asher like a person. The nurse tonight (Amy) spent almost 2 hours in the room with us when she got here prepping Asher for the night and getting his equipment ready for the nightly medication. Asher doesn't even flinch when she comes close now. That's a blessing right there due to the initial concerns I've been having here in the PICU.

As of Midnight, Asher's fever had dropped to 37 degrees C (98.6) which is normal. They'll be checking constantly tonight and ongoing to see if the fever comes back.

If we continue on this no-fever trend and the bacteria cultures come back clean, we'll be able to drop one of the Prophylaxis antibiotics we are getting (Vankomycin, Gentamicin, Cefepime) and be back down to two. We're on all of these, because in medical terms, Asher is Neutropenic right now. Meaning that his infection fighting ability is virtually zero because the chemotherapy has taken out his white cells.

Asher's mouth sores appear to be worse today and he is now getting Morphine every 2 hours so that we can try and remove some of the worst of it. Once his white blood cells come back, his sores will start to heal, until then the only thing we can do is give him the liquid medicines and stop the worse mouth infections from happening (thrush, yeast infection).